I was raised with the notion that, as infants, we enter this world as a blank page. Our parents, family, relatives, friends, society, culture, and religion then begin to write a story on that page.
Genetics has shown us that the blank page is not really blank; many predispositions, dispositions, and vulnerabilities are already printed on it before anyone picks up a pen.
Psychology tells us that no matter what was pre-printed on that page, no matter which forces have written which lines, and no matter what they left between the lines, we can still turn that page.
But some pages are much heavier to turn than others.
Her Page and His
The first time I met her, she was 36 years old, single, and in a very late stage of Huntington's disease, a disease from which we have no protection and for which we have no cure.
Her younger brother was over-privileged. He had been given almost everything, every resource a wealthy family can provide. He was living a lavish life, proud of how many hearts he had broken, how often he had cheated, how cleverly his financial advisors helped him avoid paying a penny in taxes, and how often his expensive lawyers had gotten him out of the types of trouble for which an ordinary person would have done serious time. He once told me, while laughing, “The garbage man who picks up my garbage pays me to make the garbage he picks up.”
He did not inherit the disease.
Each child of a parent with Huntington's disease has a 50 percent chance of inheriting it. She and her brother were born to the same parents. Only one of them was handed this page.
Her story came to a fast end; a few months after our first encounter, she passed away. During the very few meetings we had, she told me how almost every man who entered her life had taken advantage of her and then left her. In her own words, “I have a gift for picking men who are copies of my brother.”
If what I have shared so far makes you expect me to tell you that she won prestigious prizes despite her condition, I must disappoint you. All she tried to do with her time was to have an ordinary life. Given what was pre-printed on her page, this is a legacy that few human beings could match.
Page Weight
Research suggests that we notice the obstacles we have to push against far more easily than the advantages that carry us. Perhaps this is why her brother could laugh: He had never had to push against anything.
I call this page weight—the effort it takes simply to turn what was printed on our page before anyone picked up a pen. From the outside, it is invisible. If your ordinary life costs you more than other people's lives seem to cost them, that may be page weight.
Once, in a moment when she could not have known I was listening, I heard her speaking to another terminally ill patient. She said, “Our biggest accomplishment is not to become bitter, and every day we have the privilege to wake up, to say hi.”
Her brother was handed a page he never had to turn. She was handed a page no one would ever choose, and she spent her short life quietly trying to turn it. She never asked for anything extraordinary, only what most of us receive without noticing: an ordinary life.
If you are caring for, or grieving, someone with Huntington's disease, the Huntington Society of Canada and the Huntington's Disease Society of America offer support for families.